ICU follow-up care

Many people who have been critically ill in the intensive care unit are invited to attend follow-up clinics, as out-patients, when they are recovering at home. They will be seen either by the ICU follow-up team or by the doctors specialising in their particular condition. The aims of ICU follow-up include providing support and guidance for those people who have had an extended stay in intensive care, often over a week. Medical, nursing and psychology support may be offered for up to a year after hospital discharge where appropriate.

In the UK, there is no uniform ICU follow-up service and each hospital decides whether to have a follow-up clinic and how to run it, depending on time and resources. Many ICUs don't have follow-up clinics at all and, at present, these clinics are a relatively new though growing service. Those hospitals that do have ICU follow-up may invite patients to attend a clinic while they are on the general ward. Others might invite them over the phone when they are back home recovering. Some ICU follow-up teams will invite every patient who has had an extended ICU stay to at least one appointment. The length of time a patient is then followed up varies - some units follow up patients for up to a year, others offer one or two appointments. This depends on the needs of the patient as well as the hospital's resources. Some of the people we talked to had follow-up appointments, while others hadn't. Here people talk about their experiences of ICU follow-up.

Many people who'd had ICU follow-up explained what had happened at the appointment and what doctors and nurses had asked them. Some said the visit had given them a better understanding of their illness because the doctor had gone through their notes and talked them through everything that had happened in intensive care. They learnt about their illness, treatments, changes and improvements, and test results. Many people valued the opportunity to ask questions and noted that the consultation was a good occasion to discuss what they'd remembered of their hospital experience, their dreams and hallucinations, physical and emotional recovery, any concerns, and to gain reassurance. Some also used it to discuss aspects of their care they'd been unhappy with. One man's partner had been disappointed with the hygiene and cleanliness both in ICU and on the ward. She discussed this with the follow-up team.

So I was home within three weeks. I'd had a chat to a couple of the consultants from the Intensive Care and they already, the hospital I was in already had a follow-up clinic that they'd asked us a few months before and they'd only actually followed a couple of patients up. So they asked me if I'd like to be part of the follow-up clinic which I'm glad I did really.

As I say they explained how I'd be feeling over the next few weeks, or the next months. I also saw a specialist in Behavioural Medicine who's part of the follow-up team and she was absolutely brilliant. At first I was quite dubious 'cause I thought it would be like counselling and they asked my husband as well, not because, with several reasons, obviously as I was a member of staff on the unit, I'd been a patient on the unit, we'd lost a baby, I'd remembered being resuscitated, my husband had witnessed some of it 'cause it was a few minutes into the resuscitation before they'd realised that he was just stood there in the wings, so he'd witnessed some of that as well. So they thought it would be good for both of us and we were both a bit dubious and a bit sceptical and he declined. He said that he would be fine, and I said, "no I would". I wanted to go ahead and see the specialist, the behavioural specialist, and she was absolutely brilliant. I don't think I could have done it without her and I suppose it was a bit like counselling but it was probably a bit more involved than that.

Many people were pleased with the opportunity while they were recovering at home to go back and talk to the doctors and nurses, often for reassurance. One woman, who'd had two follow-appointments so far, praised the doctor who'd looked after her and said he had even phoned her to ask how she was getting on. Some, who were given their ICU diary at the follow-up meeting, were grateful for it and the light it shed on their illness, as well as the messages of support from family and friends. Several wished they'd been given their ICU diary before the follow-up appointment so they could have read it before the meeting and been able to ask questions. Others also had tests to check on their progress when they came to follow-up.

What happened in the follow up appointment when you went to the hospital?

Patient' Basically I meet with my consultant, talk through all the treatments that I had, he asks me how I feel emotionally and they send me for breathing tests. And that was funny because at the three-month stage the breathing tests were awful, they were really quite traumatic because I developed claustrophobia and it is, they put a plug on your nose and they put like a thing in your mouth. So you're collecting a lot of saliva, you can't breath through your nose and thankfully again the guy who was doing the breathing exercises was really understanding and he was letting me take my time because at one point, and I'm not, I'm usually dead obedient, even if I'm in pain or something. Before I went in intensive care I put up with pain but because I was getting claustrophobic I took it out my mouth and said "Look I'm really getting claustrophobic here," and he said to me "That's perfectly normal, we'll take a break."

And then when I went at the six month stage it was the same bloke which was great because he remembered me and he said "You know you're doing much better in terms of you're not, nowhere near as nervous," and we were having a bit of a laugh and a joke.

Some people had only one ICU follow-up appointment after being discharged from the hospital and said it hadn't been enough. One man felt depressed when he was recovering at home and would have liked to discuss his feelings in much more depth. A woman who'd had two follow-up meetings with a doctor said he had reassured her that nightmares were common after intensive care but she'd had no real help with her emotional and psychological recovery. Like several others, both of these people felt that doctors and nurses in intensive care were extremely busy and wouldn't have time to talk to someone who no longer needed intensive care treatment. For others who were recovering well, one follow-up appointment was enough to discuss their concerns and they saw 'no point' in attending further. They were then completely discharged and any further concerns were dealt with through their GP.

In terms of the doctors, I kind of went back and had a sort of check up with the consultant about six weeks after I came out and then about another six weeks after that and then they kind of signed me off. So I mean certainly in my case it was a very serious illness but it was kind of dealt with and cured I guess relatively quickly, but then what I was doing was coping with the physical consequences of having been that sick. And it was that really took the time to kind of get over if you know what I mean.

I mean in lots of ways it's sort of, I don't know it's another kind of element that the hospital needs to think about. And I know medical resources are very stretched and actually intensive care medicine is there to keep you alive. And kind of how you heal psychologically afterwards is not their main concern. I went back - I forgot about this - about two months afterwards and spoke to, what they did offer was, when I probed a bit more, I think it actually came through a conversation my sister had had with one of the senior nurses. They did offer for me to go back and just chat to one of the, I think she was called a consultant nurse about what happened. Which I found was very, I mean I was very lucky in that I had close relatives who were doctors, who were able to explain to me what had happened. They'd obviously talked with the doctors all the way through and understood a lot more than most of us would have understood.

But I found it very helpful to go back and just talk through a little bit of what had happened to me. And what they had done and just a little bit of how people recover. And you know I had a session with her, you know an hour long session with her and she said that I could go back but I was very conscious that she was a nurse whose main business was keeping people alive rather than anything else. And that was very sort of ad hoc. I mean in some ways what they need is, I mean the outreach nurses seem very, very good at kind of helping you make that transition from intensive care to the general ward. And they almost need to look at that model and find somebody to help you make that transition back out into the real world again.

National Institute for Health and Care Excellence (NICE) recommends that:

“If you needed structured support while you were in hospital, you should have a meeting with a member of your healthcare team who is familiar with your critical care problems and recovery. The meeting will be to discuss any physical, sensory or communication problems, emotional or psychological problems and any social care or equipment needs that you might have.

If you are recovering more slowly than anticipated, or if you have developed any new physical or psychological problems, then you should be offered referral to the relevant rehabilitation or other specialist service.

If your recovery is not progressing as quickly as you had hoped, your healthcare team is there to help you. Everyone’s experience is different and some people may need more time and help than others to recover.

If you have symptoms of anxiety, depression or post-traumatic stress, then you should be treated according to the recommendations outlined in the relevant NICE guidance. NICE has produced ‘Understanding NICE guidance’ about anxiety, depression and post-traumatic stress. For more information, see www.nice.org.uk/Guidance/CG/Published”

-NICE CG83 (2009).

No ICU follow-upSome people said they'd had no ICU follow-up, but all the necessary tests had been carried out by their GPs. Others, who had been followed-up elsewhere in the hospital, e.g. after surgery, were disappointed by the lack of ICU follow-up. Yet others, who'd had no surgery, were upset when they had no follow-up at all after being discharged from hospital, despite having been critically ill only months earlier.

Occupation: none at time of interview. Marital status: married. Number of children: 2. White British.

The one thing that again is something that hasn't come up is that they've not, and apparently there's no budget for it, so it's not the girls' fault, they've not come round to looking at me here, how I'm getting on, how, you know, I'm coping, surviving. It's very much mishmash now. There is no structure to anything. In there it was very structured, you know. They knew that they had to visit. I mean I had outreach people come round, chat to me, look at me. And I, you know, I'll be going back to the ICU unit for a chat once I've had my final investigation and x-ray hopefully, in August.

And I'll pop down to the ICU unit and I'll talk to the people. But every time I go down there I say, you know, "It's pretty poor out, the aftercare outside of the hospital or outside of ICU is pretty naff".

And you mentioned aftercare. What would you like to have had?

It would have been nice for somebody to sort of, a week after or something, to make a quick phone call, just to say, "Well, are you still alive?" or what have you. I've had nothing, absolutely nothing. And I think, I mean if it was just a case of somebody sort of gone in there for an in-growing toenail, yes, you can understand. But as I say I did actually die on respiration on two occasions. And it caused them some concerns.

Visiting ICUMany intensive care professionals think it's good for people who've been in intensive care, because of an emergency illness or accident, to visit the ICU when they are physically and emotionally ready. People often remember very little about their ICU stay and this can worry them in the long-term. For some people, follow-up appointments were also a convenient time to visit the ICU with a nurse, this time as an out-patient rather than someone critically ill. Everyone is different; some people wanted to visit ICU, others didn't, and people were ready to visit at different stages of their recovery. Some visited during an ICU follow-up appointment, others after a follow-up appointment or tests elsewhere in the hospital. Some people went to the hospital especially to visit the ICU. Before visiting ICU, some felt nervous but were fine once they were there, one man saying it had little effect on him despite having been there for several days.

After Intensive Care, you said that you had some follow-up appointments, didn't you?

Yes, I did.

How often did you have those and what did it all involve?

Since I came out of Intensive Care, which was in the August, I went back in October and I've been back in April to see them in Intensive Care. They ask me questions about how I feel, how I've reacted to coming out of hospital, general questions like that. And they showed me around the Intensive Care, showed me where I was and everything else, and, yes, it was very interesting. The actual particular National Health hospital I was in Intensive Care does this follow-up, which is, not many hospitals do that at the moment, and I found it very interesting and very helpful and, yes, that was interesting.

Did you find the diary helpful?

Yes, very helpful. It's told me a lot of things that I didn't realise and one or two things that my wife and family had forgotten. So, yes, it was interesting, all down in black and white. It's where it's all documented, who came to visit me and this, yes, it's good, it was very interesting, very helpful.

One man visited the ICU in which he'd been a patient three years earlier and recalled how the sound of an alarm took him back to the time he was seriously ill. Another said visiting ICU was one more way to make sense of all that had happened to him in hospital. A woman who visited ICU before leaving hospital felt, with hindsight, that she'd visited too soon; she would liked to have gone back later in her recovery.

Something that's quite interesting that comes to mind at this point and about three weeks ago, I've never been back to Intensive Care at all and about three weeks ago I was trying to find a colleague of mine and it so happened he was in Critical Care so I went to find him and I was invited in. And I went in and actually going there and sitting down and seeing the Critical Care, where I was, I was sitting in, perched on the end of the bed space I'd been in apparently. It had no effect on me at all, I felt completely, sort of nothing, I was just sitting in a ward and waiting for my friend to come back, come and speak to me. And then all of a sudden an alarm bell went off, one of the alarm bells I'd heard of somebody's machine alarming. And the smell came back, the sound came back, and the fear came back. [Gasps] "Where am I?" And I was immediately taken back two, three years to, this is Intensive Care, this is where I was, these people are going through, gosh we've gotta do something about this". [Laughs], you know, and I go on this roller coaster, you know, should I give up and grow begonias? Or should I fight for what I feel so very strongly about, I don't know if it comes over but I do feel very, very strongly about this because I think patients have got so much to give, you know?

When they visited ICU, many people said it was much smaller than they'd remembered or imagined it to be, one woman saying it also looked 'less scary' because the last time she'd been there she'd been critically ill and hallucinating. Some people thought they'd been moved around while they were in intensive care but then saw the actual bed they'd been in and learned that they'd been in it throughout their stay and hadn't been taken anywhere else. The feeling of being moved can be caused by the many different drugs people are given in intensive care, as well as the illness itself.

I did, yes, which was a bit scary. But it doesn't look anything like I thought it looked when I was in it. There was, when I was in it, I remember when I was first in it thinking that they had big scary furry animals with red eyes. And they were there to frighten you into not smoking. Because I was a heavy smoker before I went into hospital. And I got it into my head that it was my own fault that I was there, because I was a smoker, and that I was being punished. And so there were a lot of frightening things on the ward and there were these things that were put there to scare you. And of course when I went back there was nothing of the sort. And it looked a lot smaller than I expected, because it seemed to be huge when I was in there. But it was quite good to go back and to see it as an ordinary room, if you like, and to see the machines and see they were not as scary as you might think.

Some people said that, just as important as visiting ICU, was seeing the staff again and thanking them for all the care and support they'd given them during such a difficult time in their lives. Some said that nurses hadn't recognised them when they'd visited because they'd looked so different when they were ill, and nurses only knew who they were because they were with relatives. One woman said she felt emotional when she recognised the voice of a nurse who'd looked after her, and met her for the first time since she was well. Meeting the staff again also let the nurses see for themselves just how well they were doing. Some said that it was just as rewarding for the nurses to see them and that their care and support had paid off.

Occupation: none at time of interview. Marital status: married. Number of children: 2. White British.

I'll be going back again as long as they'll, I'm not saying I'll be back, you know, every week, every month, but I will be going back sort of again probably in about another four or five weeks.

To say thanks or...?

Just to say "Thanks" and say, you know, "How are you going?" And just potter in and say, you know, "Is it okay if we come in?" And because they appreciate us there. And I think that's, one of the best appreciations is, the one thing that I really get a thrill from is just how pleased they are to see you. And that's something that is difficult to comprehend unless you've been in that situation. You know, there are many a staff there, just, "Hello, Mike. How are you going?" And it was as though you were a family. And that's the other little thing that perhaps I should say, is that when you've spent that amount of time in there, and even like [my wife] said it, we actually miss it, we actually miss that hospital environment. Which is wrong, we shouldn't do. But we do.

Because it was an experience that, okay, we'd have preferred not to have had. But we did have it. And sometimes we sit here and we talk about the people that were in there, what they were doing, what they were training, you know, how they were talking to each other, how they were talking to us etc etc. So, yes, you know, they've left their mark on our lives as well as we've left, possibly, our mark on theirs, because obviously they get so many bodies going through there. And if they get that many bodies then, you know, well, good luck to them. It's not a nice place to be, but, they've got to be in a different world, but they cope very well.

One man said he visited the ICU nurses after having tests elsewhere in the hospital because his family encouraged him to do so. With hindsight, he realised that it had been too soon for him and that he'd like to see the unit and staff again, this time when he's ready.

My family are forever grateful and so am I, because of what they've said, that without that intensive care from really dedicated staff, life here on earth would be no more for me. I have subsequently been back to the Intensive Care ward. I felt as though I was being paraded actually by my family. They thought it would be good therapy. It would be good also for the nursing staff. But I felt that it was as much for the benefit of the nursing staff and my family, rather than for myself. I wasn't actually ready to go back and say thank you. It was convenient because I'd been called as an outpatient for some further scans, and so it was an opportunity to go and say thank you. To say thank you also to the staff in the Progressive Care unit, which is the next step from Intensive Care Unit in the hospital that I was in. And then to say thank you to the staff in the general ward. And perhaps that was the most delightful of experiences, sharing the joy. It was a changeover of shifts in the general ward of the hospital. And to see the sheer joy and delight of the two ward sisters who were changing over was a thrill, to be able to say thank you. Again it was a bit artificial. Genuine in my saying thank you, but artificial that, "Why am I here doing what I am doing? I'm not really ready for this. I feel I'm being rushed into saying thank you." In fact I'm going to have to go back when I'm in a much more clearer state in my life, to reinforce my genuine thank yous with another genuine, "Thank you so much indeed for all you have done for me."